| Previous Section | Index | Home Page |
I want to turn to the links between this Bill and existing Government policy, and how the Bill will support it. I make no apology for reiterating that our commitment to developing and delivering that strategy is rock solid. Indeed, we have already made clear our intention to publish the final strategy by the end of 2009. We are content to underline our commitment by setting ourselves a statutory time scale for doing this—with, of course, a
sensible margin for flexibility. We are also happy to underpin our commitment by signing up to a requirement to consult on the strategy.
We are already working closely with a very wide set of stakeholders. We want to hear from as many people as possible whose lives have been touched by autism, whether personally or professionally. We have already benefited from input from an external reference group comprising people with autism, family, carers and health and social care professionals involved in front-line delivery of services. We will continue to work very closely with the group over the next few months to build on what it has already done as we develop firm proposals for the final strategy. We have also commissioned a team of social policy researchers to run a series of consultation events so that we can involve many more people, especially those whose voices are less often heard.
Of course, the development and publication of the adult autism strategy will be only the first stage in the journey of transformation. We will not be simply putting it into the public domain and then leaving local authorities and the NHS to get on with it—a worry expressed by some Members today. The key to real transformation will be a focus on delivering at national, regional and local level. To support that, we will consult on and deliver detailed mandatory guidance to set out what the NHS and local authorities need to do to achieve the changes that we expect to be described in the strategy. Again, the Government are happy to be tied into that commitment by the Bill and to commit to a clear date by which the guidance will be published.
As I said earlier, I know that some might feel that the nine months between the final publication deadline for the strategy and final publication of the supporting guidance is rather a long time, but until we have completed the consultation on the strategy and are more certain about the exact priorities for action, we cannot start working up the guidance in detail. As we are going to place an obligation on the NHS and local authorities to act in accordance with the guidance, we must allow time to consult those organisations on its content. For example, we need to ensure that we do not set requirements on them that are impossible for them to meet in practice.
I remind the House that we have made a firm commitment that the guidance will be put on a statutory footing for both local authorities and NHS bodies. Although it may well be possible to issue the guidance considerably earlier than the end of 2010, we have taken the prudent step of ensuring that we have sufficient time to do the job properly. We are happy to underpin our commitment to review and reissue the guidance as appropriate. In consulting local authorities and health bodies on the guidance, and on any subsequent revisions, we intend also to seek the views of other key stakeholders.
In amending the Bill, the Government have made a firm commitment on the headline issues that the guidance will need to cover. They include the provision of diagnostic services, information gathering including needs assessments, strategic planning of services, transition planning, work force training and local leadership. Those reflect the key themes identified in the consultation, particularly the importance of public services coming together to assess the needs of people with autism and what support they need to live independently and be included in their communities. Driving a change in attitudes and culture, particularly among all front-line staff who come into
contact with people with autism, is particularly important. Of course, the list of themes is not exhaustive or exclusive. The provisions do not preclude the inclusion of other issues in the guidance; they require only that those particular ones must be included.
I turn to the strategy itself. As the House will know, we are currently in the midst of a full public consultation on its content. As I mentioned, in developing the strategy we want to hear from as many people as possible. People with autism and those who know them are the real experts, and their input will be invaluable. We have therefore undertaken a range of different activities to ensure that the strategy is properly informed by key stakeholders.
The consultation document was developed with the help of an external reference group including adults with autism, their parents and carers, health and social care professionals involved in front-line delivery and those with experience in supporting adults with ASD into employment. We will continue to work with that group over the next few months and build on its ideas as we develop the strategy.
That is only one of the many ways in which we are engaging with stakeholders, particularly people with autism and their families. Now that the consultation has been launched we are encouraging as many people as possible to respond in writing, by e-mail or through an online questionnaire—whichever they prefer. We would also like people to organise their own discussion groups, and we are making available a toolkit to support individuals and groups to do that.
Alongside the formal consultation, we are carrying out a range of activities to help capture the views of adults with autism and their carers, many of whom would find it difficult to respond formally to the consultation. Events will be taking place in each of the nine Government regions over the summer. In the first instance, they will include one-to-one interviews and small group discussions with adults with autism and their families, conducted in the way that is most appropriate to the individuals involved. There will also be interviews with professionals working with adults with autism. The activities will be wide-ranging and allow participants to talk about the issues that are most important to them. The findings of the interviews and discussions will then be used to help develop engagement workshops in each of the nine regions, which will delve further into the priority areas for action in the strategy and consider possible solutions.
A number of adults with autism find it much easier to communicate their views online and through e-mails. We are therefore developing an online community to allow those who prefer to communicate in that way to discuss their priorities for the strategy. We believe that that menu of options for involvement in the consultation means that as many people as possible can have their say and help us to develop a strategy that works on the ground.
The House would not expect me to pre-empt the outcome of the consultation. Nevertheless, with the external reference group for the strategy, which is chaired by the chief executive of the National Autistic Society, we have identified the priority themes for an adult autism strategy. They are health, social inclusion, access to employment, choice and control, and training and awareness.
Housing has been mentioned in the debate, and the Government agree that it is an important issue for people with autism. Public service agreement 16 on improving inclusion in society for those most excluded focuses on housing and employment. We will consider housing in our consultation on the adult autism strategy.
Annette Brooke: I thank the Under-Secretary for dealing with the point. Will she ensure that we take on board the fact that housing is not nowadays generally controlled by local authorities? Housing associations and arm’s length management organisations all have a part to play in providing suitable housing for young adults. It is important to look across the spectrum of housing that will be needed.
Ann Keen: The hon. Lady makes a valuable point. In my borough—the London borough of Hounslow—we have an organisation called Speak Out in Hounslow and the Owl housing association, which does great work. We must ensure that we look across the spectrum.
It is worth spending a little time considering the thinking behind the themes and what we hope to explore through the consultation. In the health theme of the consultation, we are seeking people’s views about diagnosis and post-diagnostic support; the importance of understanding local populations through data collection; meeting local need through strategic planning; ensuring that all health services are accessible to adults with autism, and ensuring that people with autism get the right support from mental health services.
Adults with autism, their families and carers often tell us about the challenges that they face in accessing diagnostic and post-diagnostic support. That point has been well made today. They can often struggle to get an appropriate assessment of their support needs from a professional who understands what it means to be on the autistic spectrum. Many people and their families tell us that they feel lonely and isolated after receiving a diagnosis and do not know to whom to turn for the right support and information.
We also need to tackle diagnostic overshadowing. The difficulties that a person with autism experiences with communication, together with a lack of awareness and understanding of their condition and needs, can mean that some professionals do not see further than the person’s autism and thus miss underlying health concerns. I mentioned previously the problem of falling into the gap between mental health and learning disability services. There is also a risk of being inappropriately treated and supported under one of those services. Training and awareness raising, which I will cover shortly, is vital in ensuring that adults with autism get the right care and support from the health service.
There are many examples around the country of good practice, whereby services identify and support adults with autism in their everyday lives. For example, in Northamptonshire Healthcare NHS Foundation Trust, the transition and liaison team provides a diagnostic service and short-term post-diagnostic support service to adults with Asperger’s syndrome. It also supports those with an existing diagnosis, especially during the difficult period of transition to adulthood.
The service focuses on interventions to reduce social isolation and mental health difficulties, and helps adults develop independent living skills and relationships. It
helps them access a range of appropriate supported housing options, better social and academic support, and learning opportunities during transition and in continued education. It helps address carers’ needs and supports improved employment opportunities for adults with autism. It also supports better access to forensic services and post-diagnosis emotional support. That sort of service is a brilliant example of how local areas can respond positively. More needs to be done to enable that to happen consistently, which is why delivery and implementation are key parts of the Government’s strategy.
Making reasonable adjustments in a health care setting can be very easy. A mother of two sons, both of whom have an autistic spectrum condition, has told us that her GP is the only means of support that they have, saying:
“He is aware that both function better in the afternoon and so we are always given afternoon appointments. If possible we are given his last appointment so that he can spend longer with our sons if he needs to.
It is also quieter then. He is quite happy to let my eldest son who is 21 read any books with information regarding treatment and also his notes on the screen to make sure that he is happy with what has been written.
He is also aware that our eldest is more comfortable speaking to some of the doctors within the practice than others and this has been noted without it becoming an issue.
If there are no appointments available we can speak to any receptionist and state that we have an arrangement with the practice and we have always been able to see someone within 24 hours.
This goes right across the board within the practice. The asthma clinic, which usually runs on a morning, will also see our son in the afternoons.
I have no doubt that we would sink were it not for the understanding and adjustments made by our GP and his practice. A little understanding really can go a very long way.”
That is an example of the health service delivering a quality personal service and treating those two young men with the dignity that they deserve.
On the theme of social inclusion, we are interested to hear people’s views on how adults with autism can access the appropriate support, including social support, to enable them to be fully included as active citizens in our society. As active and independent members of our community, we all aspire to a home of our own, a social life and the opportunity to pursue the things that interest us, whether they be spending time with friends and family, playing sport, going to the cinema or relaxing over a drink—of two units only, of course.
It is only right and fair that adults with autism should have the opportunity to pursue the same things that many of us take for granted. Adults on the autistic spectrum will have varying levels of need, and it is important that they can access a range of appropriate and timely support, reflecting the complexity of the autistic spectrum, that promotes inclusion. People’s social needs should be met through support to develop and maintain their family life and relationships. They should be able to access meaningful activities of their choosing during the day and evening, and have access to housing that considers how the physical and sensory environment can affect a person with autism.
From what people have been telling us and from the work of the external reference group working with the Department of Health on the development of a strategy,
we have heard a number of concerns about the need for strong and committed local leadership to ensure that adults with autism get the right support and access. A good example is the Liverpool Asperger’s team, which is a multi-disciplinary team established in 2003 to address the issue of people falling through the gaps in service provision, which is something that we often hear about. The needs of many people on the spectrum are often misunderstood, leaving many people vulnerable. The Liverpool team is a joint effort on the part of the primary care trust and the local authority. It takes a person-centred approach, provides assessments and diagnoses, offers direct support through its managed care pathway approach and makes referrals to other services.
The team also works with local services, including schools and colleges, mental health services and specialist services, such as those involved in the criminal justice system, and with those receiving support from mental health and alcohol and substance misuse services. The team also offers training and advice to other professionals about Asperger’s syndrome, including through regular awareness-raising sessions, playing a vital role in enabling good practice to cascade through the local area.
The key to getting things right for adults with autism is ensuring that the strategy delivers on the ground. Examples of good practice from across the country demonstrate what works. We are keen for local agencies to learn from each other and to help each other improve local services. We have to learn how to share best practice better and how to communicate it, whether in health or social care. There is an excellent exhibition at the ExCel centre today—it was also on there yesterday—about advancements in health and social care. What has been brought about through innovations in independent living and how people can be assisted would probably be beyond most people’s imagination. I commend all those involved—led by Lord Ara Darzi—in the quality programme. There were many good examples that social services could also have registered with.
In Greater Manchester, multi-agency autism services development groups have been set up in every local authority. The groups look at what can be achieved in their local area by improving current provision within resources. The chairs of these groups sit on the steering group for the consortium and share information about similar problems that different local authorities have come across, and any solutions that they have found. The consortium also funds the National Autistic Society’s family services development project, which provides information, advice and support to families across Greater Manchester. Through the work of this project, information about what is happening on the ground is fed back to the consortium to help to inform commissioning. The hon. Member for Guildford mentioned the importance of getting commissioning right. It appears that Greater Manchester has got the best practice right in that regard, and many of the services with which I have been involved are prepared to share their knowledge of how to achieve this.
The North East Autism Consortium was established to develop a regional approach to addressing the planning and service needs of people with autism. It is working towards the development of a regional commissioning strategy. Four autism services development groups have been set up to share good practice and advise on development.
We know that people with autism have particular problems with social communication and may need specific support in that area. That might involve services such as befriending, social groups or social skills training. From listening to people with autism and their families, we know that these support services can offer a vital lifeline and help to tackle social exclusion. In the National Autistic Society’s “Exist” report, one parent describes a monthly social group as an activity that gives her son the freedom to be himself. Such services are available in a number of areas across the country. We applaud the work that they do in tackling isolation and promoting confidence.
I also pay tribute to the all-party group on autism, which—along with the National Autistic Society—has achieved great things. The chair of the group, my hon. Friend the Member for Burton (Mrs. Dean), was mentioned earlier by my hon. Friend the Member for Erewash, who described her quietly getting on with the work at the back of the Committee, which is typical of her. The group’s commitment to the Bill has been overwhelming, and all hon. Members have recognised that. We should pay tribute to the work of all the all-party groups in Parliament, and to the all-party group on autism in particular, in the context of this Bill.
Newham Asperger’s service is another example of the organisations providing the services that I have described. It organises two monthly social groups, which provide adults with autism with an opportunity to meet other people, develop friendships and share experiences and advice. The service also aims to reduce isolation and build much-needed confidence.
Access to employment is an important factor that has been mentioned by many hon. Members. A further key theme of the consultation is access to training and employment. Our vision is that all adults with autism will have the opportunity to do work that is appropriate to their skills and interests, and have access to the right level of support to meet their needs in the workplace. Adults with autism should be able to access skills and education courses that help them to prepare for work. They should also be able to access support to develop those skills once they are employed, so that they can progress and achieve their full potential. It is also important to recognise that people need support towards employment and that, for some, full employment might not be what they want or are able to achieve. The key is to support each individual to achieve their potential, whatever that might be, and to give them choice and control as part of their person-centred plan.
I am sure the House is aware that personalisation, as well as choice and control, are central to the current direction of travel in health and social care. It will be no surprise, then, that choice and control is a key theme in the consultation on the autism strategy. We want to ensure that adults with autism can access the right support to help them exercise the same choice and control over their lives as everyone else. Within the choice and control theme of the consultation, we are seeking views on how people with autism can be better supported through person-centred planning.
| Next Section | Index | Home Page |